Garrett was an outgoing and inquisitive little boy until inflammatory bowel disease (IBD) limited his world. He loved dance class, performing on stage and going to new places with his family. But after his IBD diagnosis, Garrett couldn’t be far from a bathroom. Long car rides and trips to museums and parks were out. He was frequently in pain and didn’t want to eat.

His symptoms grew so acute at times, Garrett needed to be hospitalized seven times last year, totaling more than 30 days. Worst of all, the 5-year-old had lost his zest for life.

“To watch an illness crush your kid’s spirit is probably the hardest part in all of it,” says his mother, Jill.

Early signs of IBD

Garrett was 3 years old in the spring of 2017 when blood in his diaper signaled to his parents that something was wrong. His pediatrician recommended Garrett see a specialist, so they brought him to Bridget C. Godwin, MD, attending physician in the Division of Gastroenterology, Hepatology and Nutrition at Children’s Hospital of Philadelphia (CHOP). A colonoscopy showed some intestinal damage, but Garrett’s symptoms were relatively mild. Dr. Godwin prescribed an anti-inflammatory medication.

Garrett’s symptoms persisted through the summer and got worse that fall. “Our world centered on how far is the next bathroom? Where can we drive? Where can we pull over? How can we get from point A to point B? We couldn’t go to restaurants, museums or do his favorite things,” Jill says.

Dr. Godwin prescribed a protocol of four different antibiotics. But the flareups continued. Other treatments followed, but none worked for Garrett. His parents knew they were in good hands at CHOP, but their fears grew with each failed therapy.

Finding the most effective form of treatment for a patient with IBD can be extremely challenging. Treating IBD is very complicated, and there’s no single drug or combination of drugs that works for every child. Patients respond to treatments in different ways, so it can take various lengths of time to discover the most effective approach.

A year of hospitalizations

Garrett’s symptoms escalated that winter. He was stricken with severe stomach pains and up to 26 bouts of bloody diarrhea a day. In January 2018, he was admitted to CHOP for treatment of dehydration and acute anemia.

More About IBD

Garrett’s symptoms eased when he started a biologic, but soon returned. Feeling overwhelmed, Jill and her husband, Stephen, pulled together a team for the 2018 Walk for Hope. They say that raising money for IBD research and awareness offered their family and friends a way to help, and gave them a sense of control over a situation in which they felt powerless. Garrett is enrolled in an IBD research study at CHOP for the same reason.

As it turned out, Garrett couldn’t participate in the 2018 Walk for Hope because he was back in the hospital. Afterward, when he learned he was well enough to go home, he said to his parents, “Look, it worked!” Jill laughs. “He thought the fundraising dollars got him out of the hospital.”

Two months later, Garrett was again admitted to CHOP, this time for a blood transfusion and another scope. Dr. Godwin saw that Garrett’s IBD had progressed to the point that he required the specialized care of the Very Early Onset Inflammatory Bowel Disease (VEO-IBD) Program at CHOP, where he’s seen by VEO-IBD Director Judith R. Kelsen, MD, and Máire Conrad, MD, MS.

More hospitalizations followed for steroids and transfusions. In between, Garrett pushed through dance class, swim lessons and other activities. “He’s the kind of kid who doesn’t want to miss out on life. He wanted to keep running and playing, even when he was having accidents,” says his father, Stephen.

But as Garrett became sicker, his spirits flagged. His skin was pale, he stopped growing, his weight stagnated and his limbs were like “twigs,” his mother remembers. At one point, Garrett was swallowing 19 pills a day. Once a happy boy, Garrett became sullen and angry. He wanted nothing to do with his parents, Jill remembers. “He was tired of adults telling him what to do.”

Every meal that fall ended with Garrett running to the bathroom. In October, he simply stopped eating. Dr. Kelsen and Dr. Conrad spoke to Jill and Stephen about giving Garrett’s colon a rest by performing an ileostomy, a surgical operation to divert digestive waste away from the lower intestines to an external collection bag. Jill and Stephen weighed the decision carefully, ultimately opting for the surgery after realizing Garrett’s weight was nearly the same as his 2-year-old brother’s.

“It was a really hard decision for us. But I think if we had known how well Garrett would do afterward, it would have been a much easier choice,” says Stephen.

Looking toward the future

Garrett had the ileostomy the week of Thanksgiving and bounced back quickly. Now, he eats nonstop — his favorite food is chocolate and vanilla swirl ice cream, his parents say. And he’s putting on weight.

With the IBD being managed with biologics and the ileostomy, Garrett’s world has opened back up to him. He wears a special belt to keep his ostomy bag in place while he runs and plays. He returned to dance class in January and the family is having fun planning trips. They already visited an arboretum an hour’s drive away. The outing would have been impossible a year ago.

“We feel very fortunate that there is a medical community around us that has done everything they possibly can in our life and Garrett’s life and has looked for every possible solution for our kid,” Jill says.

“He was so down and so miserable. Now, that little light inside of him is back. That’s been the best part in all of it.”